I’ll start by asking you as a personal favor to read this whole thing. I know that the Internet is TL;DR, but it’s important to me that everyone read this. Thanks.

This is about my friend Peter Brayman.

Pete grew up in a small rural town in New York. He was a New York State firefighter EMT, an amateur radio operator, a graduate of SUNY Buffalo, and a computer nerd. It was in that last capacity that we met. We were both “Guides” on America Online, a half-paid half-job, half cop and half tech support. Pete and I hit it off immediately. We shared ham radio, computer nerding, and medical jobs. Partly because of the medical background we shared also a dark, dark sense of humor: the slang of those who see death and injury, the shocking little jokes, the deadly funny banana-peel stories

We were close friends for years. We spoke daily, sometimes almost all day over instant messaging. After our AOL activity, we went into parallel careers connected to the Internet and its technologies. We helped each other out learning new things, gave each other tips and leads, hosted each others’ projects. I can think of at least five running gags that we shared over the years that no other person on Earth would have appreciated.

Our closeness was deepened by our differences. I am verbal, a natural writer, knowledgeable about many varied things, judgmental, snobbish, hypercritical of myself and others, and sexually frustrated. Pete was a terrible speller, very focused in his education, tolerant, accepting of others’ faults, and successful with women. Our politics differed, but he listened politely to my little rants and never offered anything in response but what we shared. Especially in those days I flew into little rages too often, and his anger was rare and not much spoken.

Pete died too young, three years ago today. He left a fiancée, a beloved uncle, some good friends, and me. It’s a cliché to say that you think often of someone who’s died, but it’s true in this case. Frequently I want to share something with him, or think of something he’d say right now.

So far, so conventional. Why am I writing an everyday story of an everyday life?

There’s something else about Pete that everyone noticed first. He was born with a dreadful disease called Neurofibromatosis-2. This causes tumors to grow on nerves and is uniformly fatal. From childhood he knew that he was permanently ill and that this could not get better. Since his mother was affected with the same disease, he could see his future in real time.

Pete had occasional surgeries his entire life, ranging from a trim of some lump on an extremity to invasive brain surgery. He lost mobility, became deaf, lost use of a hand, and suffered through another hundred failures of the flesh. Because of deafness and the effect of the disease on his appearance he appeared to be mentally handicapped and was treated as such. Past a certain point in the process he was clearly in discomfort all the time.

Because he was on full disability, he could not work full time, although he had a successful consulting business. Too much success and he would lose his medical benefits and therefore die. Survival required subtle skill with government paperwork. As with other handicapped people he had to fight every social obstacle to those with mobility and hearing problems.

On top of all this, Pete had a family that was unworthy of him. I won’t go into details, because he wouldn’t, but I am to this day gravely disappointed in everyone except his uncle, who is a fine man.

Now here’s the thing: Pete lived an ordinary life.

He achieved as an EMT and a college graduate. He worked hard and well at a technical profession. He dated a few women and was engaged to a wonderful one. He had moderate conservative politics and moderate religious views. He liked ice cream and loved Disneyland. He was proud of being a firefighter and embarrassed at his bad spelling. He was, unlike all my other friends, a moderate and ordinary man who sought out and led an uncomplicated life.

How the hell did he do that?

His attitude toward life’s giant sack of bad luck was perfectly sane. He didn’t deny the disease or pretend to others that it was okay. Everything about it was monstrously unfair and awful; it hurt; it made him feel different and separated from others; it frightened him. There wasn’t any sentimental heroism in Pete. He didn’t give out false hope or encourage others to do so. When he was frustrated or scared or in pain he would talk about it honestly.

Somehow he also avoided making the disease his life. A typical conversation with Pete was honestly about ice cream or car crashes or the hilarity of AOL management without any bit of that awful darkness leaking through. He was genuinely sympathetic to my own life problems. Pete never pulled the “my life is worse” card even though perfectly entitled to do so. He would help others and do nice things for his fiancée in the manner of any other guy with good values.

Despite a ridiculously awful childhood, a loathsome and deadly progressive disease, social barriers, and every bit of crap luck that goes with any other person’s life, Pete was an ordinary guy with a good heart. His natural resilience made you forget in a moment that you were talking to someone this profoundly unfortunate; it was just Pete. It wasn’t heroic, or some feat of overcoming to be patronized by the sentimental, or a great success at denial. He recognized and acknowledged the huge disaster and at once led a life that paid no rent to Death.

Pete just wanted a regular life, and he worked harder to get one that anyone I’ve known. I won’t insult him with a romantic picture of his life and say that he won. The disease won and tortured him to death in his youth. But here’s what he knew: a terrible misfortune is no reason to turn your life upside down.

So here’s to Peter Brayman, an ordinary guy and a great friend. May we all come this close to winning.

7 responses to “A Regular Guy: For Peter Brayman”

What a beautiful tribute to an awesome guy. I had the pleasure of meeting him a few times, and we once, with a bunch of other Guides, shared a wonderful dinner when he was downstate NY. That was many years ago and I will remember it always.

Like with so many people, we lost touch over the years, but when I heard of his passing, I knew a good guy was on to better things.

Thanks for this write-up. It’s important to remember Pete, and remember this very important lesson.

One of my fondest memories of Pete was a conversation we had one night in Yorktown, VA in the front yard of a mutual friend.

I remember personally being kind of frustrated with the situation I was in with the lady in the house we were visiting. For all I know, he was equally frustrated, though he didn’t say so. Our conversation was pretty banal… it was night and we were standing near some tall pine trees looking up at the stars, talking about the weather and how clear it was. I’m pretty sure I was drinking a beer.

I don’t remember all the details of what was said, but I remember being preoccupied and furiously thinking about what was going on in the house while Pete and I were engaging in small chat. Ultimately he told me that he would soon be having surgery that likely would end up robbing him of his hearing (which it did.)

Kind of like in this post, I realized my problems with the lady in the house just weren’t as important as I thought they were.

I miss our occasional chats, and think of him from time to time. I think about how such a bad hand was dealt to such a good guy, and how life sometimes just isn’t fair. But you never would have known that if you just IMed with Pete.

I was fortunate to work a few “shifts” with Pete back in the heyday of AOL as a Guide and one of the best experiences developing a friendship. I was unable to stay in touch with Pete as closely as his friend, but to he I can say only one thing..

About 10 years ago, I fell about 17′. I’ve had nine substantial surgeries and a few minor ones since. Surprised? I don’t talk about it if I can help it, as if it would make me somehow less of a person.

Conrad, this post has given me the courage to stop pretending that everything is all right. It’s not, but I’ll keep on going until someone or something bigger and stronger than me makes me stop. So, love me as I really am or don’t, your choice – but Pete’s courage reminded me to love myself as I am.

I came across this today – I saw an IAMA on reddit about someone with NF type I and immediately thought of Pete. I can’t believe it’s been 3 years, I was very saddened when I heard that he had lost to his disease. He was a great guy, he would give the shirt off his back to anyone. I first met him as a community leader (after the guides were removed) and then I worked for him when he was the manager of the now defunct CareThere site, he sought me out knowing I was in need of a job and was kind enough to give me a chance. I always thought the world of Pete and miss chatting with him, though we had actually fallen out of contact due to some of his family issues. The world is less a great man now and he will always be missed.